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Last Thursday I had my ‘last’ chemo. Well, my last cycle of the drugs docetaxal and cyclophosphamide that have been knocking me around for the past ten weeks.

And it’s fair to say that I’ve been struggling. You might have noticed a touch of something in my recent posts. Less of the positivity and more of the dark stuff. It’s definitely been a rough ride and while I promised myself I’d keep it honest it has definitely taken a toll.

It isn’t a surprise that I suffered. It isn’t surprising how angry I got. It was (is) a pretty shit experience. I don’t want cancer in my life and I hate chemo. I don’t want my kids to be learning how precious life is already. They should get to stay innocent a while longer.

My mum taught me to knit when I was a kid. I remember my first real project was a wine coloured Aran jersey that was way too big, and I cast off too tightly so it could barely fit over my head. I loved that too big jersey but didn’t know how to fix it so I eventually gave it to charity (idiot!).

Apparently I did my sister’s knitting homework (!) for her when I was 10 cos I didn’t want her to get in trouble for refusing to do what she saw as a sexist piece of homework.

I have a friend who is going through his own particular level of hell this year. We sometimes let off steam by trading ‘things people say’.
‘Look after yourself’
‘One day at a time’
‘Just take it slowly’
‘Stay positive’

Sometimes I forget to put quotation marks which leaves him confused about whether we’re still joking or if I’ve suddenly started dishing out advice. My bad.

… and I still don’t know if it was the right thing to do!

Last month I went on my first ever ‘protest march’ with a bunch of wonderful stage 4ers. We met at the entrance to parliament. And marched up the short path to parliament. It still counts right?

The march was to deliver a petition for Pharmac to fully fund two breast cancer drugs – Ibrance and Kadcyla – that can extend the length of the disease free period for stage 4 breast cancer (Ibrance or hormone positive tumours and Kadcyla for HER2+ tumours). While there is some Pharmac funding assistance provided, for Ibrance you currently need to pay for 11 cycles at c$6,000. Per cycle. So $66,000 in total. Then Pharmac will fund any additional cycles beyond that if it is still showing a benefit (no idea how that is proven!)
As shown in the recent report ‘I’m still here’ published by the Breast Cancer Foundation, the survival rates of stage 4 breast cancer are pretty woeful in NZ, with a median survival of 16 months from diagnosis (overseas rates are much higher, I found one US report stating median survival of 36 months). I’m Still Here states there are around 700-1000 people (99% women) living with advanced breast cancer (ABC) in NZ. Around 3,300 people are diagnosed every year with 300 at the advanced stage. Around 600 people will die each year. (The stats are all generalised, what does that tell you…). There are numerous different types of breast cancer which means these drugs aren’t for all ABC patients. Best guess is that around 250 might need Ibrance and considerably less, maybe 50, need Kadcyla.

This is a question I get a lot (yes, yes I know, so do you. Just work with me here). It’s usually in one of two situations: firstly from someone who knows me but hasn’t seen me for a while – ‘hey so cool to bump into you! How are you???’
Or else it’s someone who knows what’s going on and asks with both interest and concern, ‘so how are you’. In both situations an actual proper answer is required. In the first, there’s usually an awkward pause while I decide what to say, and then I launch into a full blown, detailed update, throwing the person into a slight tail spin, swamping them with unexpected and gruesome details until I finish with something along the lines of ‘but mostly I’m good’.
The second situation can be harder. The person knows the context but possibly not exactly what the last few days have entailed. Mostly, if I’m out in public it means I’m physically okay. Not always amazing but at least okay, and seriously grateful for that. If it’s my bad week, then I’m probably curled up in a ball and easily upset (in which case why are you asking?!). Again a detailed answer is seems appropriate but at least this time gruesome isn’t necessarily awkward or unexpected. But once again I finish with ‘but mostly I’m good’.

Actually no. I was going to write this as a letter but chemo and I aren’t exactly friends and there’s really no hope for us. So best not.

Instead how about a day by day synopsis, now that I’m essentially half way through this chemo regime and might be starting to get into the groove! (Super exciting and yes I’m celebrating. But…. well it doesn’t end at chemo.)

So I though I might write a brief little history of my cancer so far. Just in case I have accidentally managed to not tell someone absolutely everything (I don’t over share that much do I???)

So anyway, turns out my family is good at cancer. Two aunts and (I think) all four grandparents died of or with cancer, and numerous others have had or are still dealing with the hideous disease. Oh and two of my sisters have had precancerous growths removed this year.
So it should be something I knew stuff about. But really, no, I knew nothing.

So yesterday my hair started to fall out. Maybe 100-200 hairs during the day. Today I’ve filled a small bag. I still have over 50% of my hair right now but it looks weirdly flat to me. And it hurts! I never knew it would hurt. I can see that the chemo has melted the follicles away so I guess my hair is just quietly stabbing me in the head. Fun times.

I don’t want to be bald. But I also don’t want to die of cancer. Bald trumps dying, right? But, man this is not much fun. I’ve had weeks of wondering when will it start? Now that it has, how long will it take? What will I look like? How will I cope with a wig? When will it grow back?And gosh, I did not expect it to hurt. I found out this week that for my particular chemo drug, there’s actually a real chance my hair won’t ever grow back. Like up to 15%. Let’s just not think about that…